Vol. III, Issue #24
Bergen CFS Support Group Newsletter
On December 18th members of the group gathered to celebrate the holidays – all of the seasonal holidays. It was a time to share food and stories and friendship. This annual event is a very popular part of the year and even though some of our members were not able to attend, those who did make it had an enjoyable afternoon.
We are repeating this request in case some of you missed it during the busy holidays.
The NJCFSA, as described above, is our parent organization. It is composed of volunteers who work for all of us. The group is always in need of new people to help share the load. Some of the areas would be seeking advertising (local and corporate), posting events, writing articles for the NJCFSA newsletter, and so much more. There are many jobs that can be done at home without a large energy output. If you think you might be interested, please contact Pat at the email address at the end of this newsletter.
From CFIDS & Fibromyalgia Self-Help
When All Else Fails, Take A Nap
By Lisa Lorden
Editor’s Note: Lisa Lorden, a CFIDS and
fibromyalgia patient from
If you suffer from Chronic Fatigue Syndrome or fibromyalgia, you've probably experienced those times when you simply "hit a brick wall"—you can't continue with even a seemingly simple task, and your body (or your brain) just gives out. When I have times like those, I'm occasionally too tired to even recognize what the problem is. I feel overwhelmed, uncoordinated, weak, confused, or depressed. Sometimes I just give up and go take a nap. Lo and behold, I almost always arise feeling at least a little rejuvenated and better able to do whatever it was that I couldn't before. Thus, I've developed a personal slogan: "when all else fails, take a nap."
Apparently, I'm not the only one who uses napping as a technique for better functioning. Famous nappers include Albert Einstein, Thomas Edison, Leonardo Da Vinci, Ronald Reagan, Bill Clinton, and many others. Brahms napped at the piano while composing his famous lullaby. Winston Churchill reported that he required a daily afternoon nap in order to cope with his wartime responsibilities. Even Jane Brody, health columnist for the New York Times, has said that naps should have "the status of daily exercise."
Why, then, is the practice of napping seen by society (at least American society) as merely a symbol of leisure, or even of laziness? Professor William Anthony, author of The Art of Napping, suggests: "Our culture has developed on the mistaken belief that productivity and napping are two different extremes." In fact, sleep deprivation is as American as apple pie. According to the National Sleep Foundation's (NSF) 2000 Omnibus Sleep in America Poll, 67 percent of adults get fewer than the recommended eight hours of sleep each night. Says Darrel Drobnich, director of government affairs at NSF: "We get about 20 percent less sleep than our ancestors did 100 years ago. We just don't put a priority on sleep."
In addition to the stigma that may be associated with napping, proponents of good “sleep hygiene" claim that a nap interferes with night-time sleep. But research has shown that people who nap report no greater nocturnal sleep problems than non-nappers. In fact, napping reflects a natural biological rhythm and is a common feature of healthy adult sleep-wake behavior. Professor Anthony also points to research suggesting that napping has a positive effect on both performance and mood.
Napping for CFS and FM Patients
For CFS and FMS sufferers, napping when you need it may be even more essential. With sleep disorders a common problem in these illnesses, a lack of restful sleep or reduced total sleep hours may require your body to make up the difference. CFS specialist Dr. Charles Lapp suggests that people with chronic fatigue syndrome (PWCs) "should strive to go with the flow or accommodate their own body rhythm." There may be periods when PWCs just can't sleep; in such cases it's best to nap and catch up whenever possible.
You should experiment with what works best for you. If you feel you need a nap but find that napping makes it harder to fall asleep at night, try limiting daytime sleep to 30-45 minutes or avoiding naps after . Most of all, listen to your body; don't let the misperception that naps are a sign of laziness prevent you from responding to your own needs. Certainly, CFS/FMS sufferers don't need one more thing to feel guilty about. Professor Anthony recommends that people become "proud nappers" in order to change our "nappist society." Says Anthony:
"First of all, we need to be vigilant about nappist vocabulary, often used non-too-subtly by napaphobics. Proud nappers must inhibit people from using such phrases as stealing a nap, sneaking a nap, going down for a nap, and caught napping. Nappers have naps. They don't take, steal, or sneak naps. Nappers don't go down for a nap, they prepare for a nap. Nappers are never caught napping, because there is no crime to catch. Nappers are merely seen napping."
In fact, there are signs of progress; the NSF survey showed that naps are on the rise. About 10 percent of respondents said they nap before going to work and 35 percent nap afterward. In addition, some companies are waking up to the benefits of the nap; 16 percent of people surveyed said their employers allow naps during the day, and forty-six percent of those allowed to nap at work do so.
So next time you feel like you can't go on, consider the potential benefits of a nap. If all else fails, you just might awake ready to begin the day anew. Winston Churchill said: "You must sleep sometime between lunch and dinner, and no halfway measures. Take off your clothes and get into bed. That's what I always do."
Chronic Fatigue Syndrome is a Legitimate Medical Condition
Syndrome linked to neurological abnormalities
Chronic fatigue syndrome defines a range of illnesses including fibromyalgia and Gulf War syndrome, all of which have fatigue as a major symptom. Even among medical professionals, there is a disagreement about the causes, diagnosis and treatment of CFS because so much about the disorder remains unknown.
One reason CFS is difficult to diagnose is because it shares symptoms with many other diseases, including multiple sclerosis and lupus. Even when other illnesses are ruled out and a CFS diagnosis is given, there is not a standardized course of treatment and it's difficult for doctors to measure patient improvement. Estimates are that two to four times as many women as men are diagnosed with CFS.
The Georgetown study, published in the November edition of the BMC Neurology Journal, an online publication, reveals that patients diagnosed with CFS and its family of illnesses have a set of proteins in their spinal cord fluid that were not detected in healthy individuals. These proteins might give insight into the causes of CFS and could someday be used as markers to diagnose patients with the disorder.
"For years, patients with chronic fatigue syndrome have suffered from painful symptoms for which there is no blood test, diagnosable physical condition or any method for doctors to measure improvement," said James Baraniuk, MD, assistant professor of medicine at Georgetown University Medical Center and first author on the study. "Our research provides initial evidence that chronic fatigue syndrome and its family of illnesses may be legitimate, neurological diseases and that at least part of the pathology involves the central nervous system."
The disorder is characterized by profound fatigue that is not improved by bed rest and that may get worse with physical or mental activity, according to the Centers for Disease Control and Prevention. Persons with CFS usually function at a lower level of activity than they were capable of before the onset of illness, feeling too tired to perform normal activities or easily exhausted with no apparent reason.
Patients also report various nonspecific symptoms, including weakness, muscle pain, impaired memory and/or mental concentration, insomnia and post-exertional fatigue lasting more than 24 hours.
The study looked at 50 individuals suffering from at least two disorders related to CFS, including fibromyalgia and Gulf War syndrome. By examining spinal cord fluid in patients with CFS and in healthy individuals, the researchers found that CFS patients have 16 proteins that healthy individuals do not. Five of these 16 proteins are found in all patients with the illnesses but in none of the controls. The results indicate that those 16 proteins could possibly serve as a "biosignature" for the disease and could someday be used to diagnose CFS.
"Although this is a small study and more research on the subject is necessary, these results indicate it might be possible to develop a simple laboratory test to diagnose these disorders in the future," Baraniuk said.
Other co-authors on the paper include Begona Casada, PhD, and Hilda Maibach, MS, of Georgetown University Medical Center; Daniel J. Clauw, MD, of the University of Michigan; and Lewis K. Pannell, PhD, of the University of South Alabama; and Sonya Hess, PhD, of the National Institute of Diabetes and Digestive and Kidney Diseases.
The next scheduled meeting will be on Sunday January 15th. We will be having an open discussion meeting. Bring your questions or other issues you might like to discuss with the group. The meeting schedule for February through June will appear in the January issue of this newsletter.
This newsletter is intended for CFS patients in the area of this support group. The purpose is to share information and support. If you have questions about meetings please contact Group Leader Anne at firstname.lastname@example.org. Subscription problems: Nancy Visocki at email@example.com. Editor: Pat LaRosa at firstname.lastname@example.org.